I'm lost - no idea what I should do

[Mugs19]

I'm afraid this is going to be a long post.

I have reached Liothyronine dose 60 mcg daily = 20 mcg x 3 daily. I have been on Teva because excipients in other brands caused me problems.

I have a lot of other problems to consider. I have been trying to get a shoulder replacement operation for over 3 years. I thought I was going to get it when I went to Pre-op checks in October but they heard a heart murmur. I had an appointment on November 4th with my Endo, just after I had an Echocardiogram. He looked at the results and said he could see a small deterioration from when he sent me for one 3 years ago, but thought I should be able to have my operation. However he thought POC would want an opinion from a cardiologist. He asked if I would like him to refer me to one, to speed things up. I jumped at this offer as I know how slowly POC operates.

I had an appointment by phone on Feb 5 with a cardiologist. He said I could have the operation and from now on I was on his books for regular checks to watch for further deterioration, with 6 monthly scans. Unfortunately POC took no notice of his letter as they had not made the referral. By the time I had roused POC he had booked my next Echocardiogram for April. This shows a dramatic deterioration in my valve function.. So no op for me.

I am waiting for an appointment with a Cardio team who will decide how to operate. I don't know how long I will have to wait. I am suspicious of their reaction when they know what I have been taking.

I was due to raise my dose by 5 mcg lio. My blood test last week had these results:

CRP HS 0.85 <3

Ferritin 104 30-650

Folate Serum 12.4 8.83-60.8

Vit B12 98 37.5-188

Vitamin D 110 50-250

TSH Sample error

Free T3 9.8 3.1-6.8

Free T4 0.6 12-22

Thyroglobulin antibodies 80 0-115

TPO Antibodies 289.6 0-34

Medichecks 25 May

Now I don't know whether to increase my dose by 5mcg to 65mcg daily. I had been toying with the idea of reducing the later doses and taking a much bigger one first thing am. I am much better later in the day.

I cannot make good use of signs and symptoms:

I have had a tremor for years because of my arthritis

My IBS means I can be constipated one day and loose the next, though I am predominantly constipated and eat to adjust.

I am still cold and was wearing a jumper yesterday.

At the moment I am having better, more awake spells on and off, so I am hopeful that increasing the dose is the right thing to do, though this has happened before and not sustained improvement

There is another problem too. I have had to change brands to Roma and have had my first prescription delivered. This is because the local pharmacy , who have always been very good to me cannot get Teva at a price which does not leave them out of pocket. I have had problems with supply 3 times in the past which took up a lot of time and were not easily resolved, so I gave in and agreed to try Roma. I have at least2 months supply of Teva left, so do I change now or increase dose first?

I am weary and don't know which way to go. The Cardio I have seen will see me again in 3 months. I have been unable to find out how long the waiting list is for the surgical team. Part of me thinks why bother. I will obviously die from heart failure eventually if nothing is done and looks preferable to gritting my teeth every day to face another day of pain and dependency on my lovely husband who is getting exhausted -we have a disabled son he now has sole responsibility for as well.

[Brightness14]

I have a problem too. I have an ear tumour which was to be removed next month. My thyroid levels are so bad now that I had to have it delayed. How about that I have now let everyone know about my problem for the very first time.

[RockyPath]

Sorry to hear of your struggle, Mugs19. It does sound like you should make the adjustment with the Teva first. That way you will have a definitive answer using a known product. Then you will have to figure things out all over again with the new product, but you'll have an idea of what to do, based on your symptoms.

Your heart valve will do better with the right amount of T3. As will your gut. Everything in your body will be function better when supplied with the optimal quantity of thyroid hormone.

You're smart to spread it out over the day. If you're better later in the day, you might want to break it up more and have a third dose, when you get up in the middle of the night. This might make for a better morning experience.

Good luck.

[Mugs19 in reply to RockyPath]

thankyou. I am thinking that’s probably the best way.

[RockyPath]

And as a manufacturer notes in the product literature: "Levothyroxine has a narrow therapeutic index. Regardless of the indication for use, careful dosage titration is necessary to avoid the consequences of over- or under- treatment. These consequences include, among others, effects on growth and development, cardiovascular function, bone metabolism, reproductive function, cognitive function, emotional state, gastrointestinal function, and on glucose and lipid metabolism. Many drugs interact with levothyroxine sodium necessitating adjustments in dosing to maintain therapeutic response."

[Mugs19 in reply to RockyPath]

Tod is interesting. Which manufacturer?

[RedApple Administrator in reply to Mugs19]

This is on the PIL for the American brand Synthroid. See under 'Precautions' here accessdata.fda.gov/drugsatf...

[Mugs19 in reply to RedApple]

many thanks. This will go with me if I ever get seen